In Rural Alabama, a Longtime Mistrust of Medicine Fuels a Tuberculosis Outbreak

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Pamphlets were distributed at a community meeting last week in Marion, Ala., that was hosted by the Alabama Department of Public Health to educate residents about the tuberculosis outbreak.CreditCreditMeggan Haller for The New York Times

MARION, Ala. — When Patricia Church, a 41-year-old warehouse worker, felt sick recently, she suspected that she had a cold. But she also feared something more deadly that has been going around this small, impoverished city: tuberculosis.

“I feel like I had been around someone that had it, and I might die from it if I don’t find out whether I got it or not and get it treated,” Ms. Church said after she learned last week that she did not have the disease. “I was nervous. I was real nervous.”

Marion is in the throes of a tuberculosis outbreak so severe that it has posted an incidence rate about 100 times greater than the state’s and worse than in many developing countries. Residents, local officials and medical experts said the struggle against the outbreak could be traced to generations of limited health care access, endemic poverty and mistrust — problems that are common across the rural South.

“There’s not a culture of care-seeking behavior unless you’re really sick,” said Dr. R. Allen Perkins, a former president of the Alabama Rural Health Association. “There’s not support for local medical care, so when something like this happens, you have a health delivery system that’s unprepared.”

In Marion, a city of fewer than 3,600 people, the toll of the slow-growing bacteria, commonly referred to as TB, has been staggering. Since January 2014, active tuberculosis has been diagnosed in 20 people, nearly all of them black; three have died. (Six people who live in other cities in Alabama have also received diagnoses of active tuberculosis and have been linked to the outbreak here.)

More than two dozen others have been infected but have not shown symptoms and can be easily treated. State officials expect that figure will increase as hundreds, and possibly thousands, more people are tested.

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Dr. Albert White, a public health officer for the Alabama Department of Public Health, spoke at the meeting last week.CreditMeggan Haller for The New York Times

The authorities said the outbreak had spread so widely and lasted so long because patients had been reluctant to disclose their contacts to public health officials. Some of that is linked to suspicions that the health officials will report illegal activity to law enforcement, but it is also connected to worries of being ostracized, or at least stigmatized, in a community as small as this one.

“The phrase that every single case uses is, ‘I don’t want nobody knowing my business,’ ” Pam Barrett, the state official who is leading the response, said before the state held a community meeting on Thursday at a local school. “For most of us, it’s not too hard to come up with the main people that you hang around. But if you’re doing maybe some things that you don’t want other people to know about, or doing some things you’re ashamed of, you don’t want people in your business, and you’re not going to tell me.”

“There is a mistrust of government medicine, in the African-American community especially, because of Tuskegee,” Dr. Perkins said. “It dates back to that. We haven’t dealt with the damage of Tuskegee in this state at any meaningful level.”

In 1932, the United States Public Health Service began a study of untreated syphilis that involved 600 black men in Macon County, Ala., which includes Tuskegee. The men, many of them sharecroppers who lived in poverty, agreed to participate in the study and received certain medical services for “bad blood.” But researchers failed to make complete disclosures about their work, and the men were not offered penicillin, which in 1947 became the recommended treatment for syphilis. In 1972, a federal panel found that the study was “ethically unjustified,” and the government ended it that year.

Many people in Marion, where about 63 percent of the residents are black, said they knew little about what had happened in Tuskegee, but they often said their wariness of medical professionals had been passed on through generations. Some said the dire nature of the tuberculosis warnings made them feel that they had little choice but to consult heath officials.

But they also said they believed that the authorities had not moved aggressively enough to contain the disease before it swelled into an outbreak in Marion.

“It’s a good thing that they are here to try to help us so this thing won’t kill us all,” Lula Clemons, 52, said after she attended the state’s presentation last week. “But I felt like when the first case of TB came along, they should have quarantined that person.”

There is even disagreement about the depth of the problem, the scale of which only recently became public. Downtown, where many storefronts are empty, there are few indications of the outbreak. Elsewhere in Marion, which drew national attention last year after a judge told defendants who could not pay fines that they could participate in a blood drive or be jailed, the warnings are more visible, if still relatively scarce. At Re Nu U Hair Designs, a state-produced sign posted next to a painted barber’s pole said: “WARNING! Tuberculosis (TB) Outbreak.”

The TB outbreak has implicitly reinforced Marion’s chronic divides of race and class, particularly because of a controversial plan to compensate people if they submit to blood screenings. With money from a federal grant, health officials in Alabama are offering residents $20 for initial tuberculosis testing, $20 for a follow-up visit and another $20 for keeping an appointment for a chest X-ray, if one has been recommended. Anyone who is found to have been infected can receive $100 for completing treatment.

“It is a big deal, don’t get me wrong, because several people have it here,” said Lyn Royster, 50, a florist who was invited to City Hall to be tested for tuberculosis. “I just think it’s gone way overboard.”

Some Marion residents acknowledged that they would be tested only because of the financial incentive.

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Patricia Church received cash after bringing in family members for tuberculosis testing at the Perry County Health Department.CreditMeggan Haller for The New York Times

“I know for a fact I’m clean,” said Arthur Moore, 29. “I’m waiting to go down there and get tested myself to go get the money.”

Screening incentives are not unprecedented, but they are usually tailored to far narrower groups, like people who lived in a homeless shelter at a certain time. Researchers said an offer to an entire city, no matter its size, was extraordinarily rare.

“It doesn’t sound like people have been panicked enough,” said Dr. Richard E. Chaisson, the director of the Johns Hopkins University Center for Tuberculosis Research. He said the broad nature of the screening suggested that “there’s a target group here, but they’re trying to avoid mentioning who they are.”

In other potential outbreaks, Dr. Chaisson said, people sometimes demanded testing, even if experts believed they had been at minimal risk for exposure.

The first days of incentivized testing brought extraordinary numbers to the squat Health Department complex, where someone had taped to the counter a piece of paper that read, in pink highlighter, “TB testing sign in,” above an arrow. Ms. Barrett said nearly 800 people were tested last week.

No one is certain of what will happen if the new testing effort fails. But Mayor Anthony Long said he already feared that the repercussions of the outbreak, whenever it ended, would linger.

“It puts a bad damper on the city,” said Mr. Long, who had not yet been tested. “The city is already in a financial struggle and catching the hard times. This is another thing to help pull it down.”

A version of this article appears in print on , Section A, Page 9 of the New York edition with the headline: Outbreak Is Fueled by Mistrust in Alabama. Order Reprints | Today’s Paper | Subscribe